So I'll start a revolution from my bed…

Hello! Did I just send you this link? Are you trying to have an argument a “discussion of our opinions” on Twitter?

Then this post is for you, my friends!

I don’t have arguments “discussions of opinions” on Twitter. This is why:

You can’t make a point in 140 characters. So I’m not about to try.

You probably have an inaccurate view of the world, such as “all poor people are scroungers” or “disabled people should just try harder” or “men have it hard too!” or similar.

I do not have the time or energy to explain any of the following to you over Twitter:

Feminist theory

The social housing allocation system

The welfare benefit system

Various models of disability.

It is not my job to educate you on any of the above. If you want to know about it you can go out and find out about it, just like I had to.* In fact, there’s some info about that stuff here on this very blog!

In order to explain why your view is incorrect would require way more than 140 characters and requires you do stuff like read things. Which you either a) can’t be bothered to do or b) think you’re correct about anyway.

You feel your opinion overrides my real life experience and knowledge. It doesn’t, it never will. I know you find that hard to accept, but you’ll get there.

But, I’m 99.9% sure that you have no interest in doing any of the above because all you want to do is tell me how poor people are scroungers/women are all man-hating feminazis/welfare benefits are ruining this country or similar. In which case I’ll probably just laugh at you for a while until I get bored and go off to find something more entertaining to do.

*this does not include any of the following sources: The Daily Mail, The Sun, The Express, http://www.poorpeoplearescroungers.com, your mate who knows this bloke whose next-door neighbour got a house for free and she gets £30,000 a year and doesn’t work, Katie Hopkins, Jeremy Kyle

I called the DWP last week, a month after I’d sent the letter. They found it on their system, and the person I spoke to on the phone told me they’d basically forgotten about it. It had been scanned and entered, and then left.

Today I called again. The decision still hasn’t been made. This time I was told it could take up to nine weeks for a decision. Which is halfway through December. Just shy of three months after my PIP was stopped.

In this time, surprisingly, I have not magically become better. I have not adapted to life without PIP because, funnily enough, I kinda need it. My extra financial requirements have not disappeared. But now I don’t have the cash to meet them.

My PIP paid for my weekly gentle yoga classes that helped me move and got me out of the house. It paid for a bus, it paid for me to park the car. It paid for me to use the local Shopmobility services when I went out. As a result of me losing my PIP our ESA payments also went down. This means I now cannot afford the yoga class, or transport, or much of anything really for the moment. Losing my PIP – albeit only temporarily, I hope – has meant I’ve lost a lot of my independence. I cannot afford to get out the house. I cannot afford to go to places and meet people. This is how people become isolated – it takes sick and disabled people more energy than most to get out the house in the first place. If they’re constantly worrying about if they can afford to, that’s not going to help.

I’ll be alright – I know how to fight this and if it goes further and I have to appeal, well, I can do that. But it’s not fun, and it’s not easy, and I’m ill and I’m tired. How am I going to make myself “work ready” if I have to spend all my very limited energy fighting for the basic stuff I need to be able to live my life? Removing essential money from sick and disabled people doesn’t make them more likely to succeed, it won’t make them more motivated to go out and work. In fact, it is doing just the opposite. We’re all very tired of fighting.

Today I received the most entertaining and most depressing document of my life. The ATOS report for my Personal Independence Payments assessment.

You may remember I went for my assessment back in July. The guy who assessed me was really nice, he was relaxed and chatty and not like a driving examiner or someone terrifying, so I’m going to give him the benefit of the doubt and say that the document I received today was not due to his incompetence, but due to a broken system that does not allow people to do a good job.

Or spellcheck their documents, apparently:

“…she will manage to put out a bowel of cereal for herself.”

Right. Sounds…disgusting, really.

The guy was typing this as I watched so I know he didn’t try to type it with his head or with both hands tied behind his back.

Like this:

**This entry is about the Samaritans Twitter app and has brief references to stalking and suicide**

It’s always been assumed that in large organisations, the higher-ups don’t really know what the lower-downs are doing and decisions often get made that leaves those who do the work shaking their heads at what’s going on.

Full disclosure: I used to be a Samaritans volunteer. I worked on the phone line, the email and face to face. I did this for roughly three years. Samaritan volunteers get very good training on how to do their job.

Today the Samaritans released information about a new app – the Samaritans Radar. It’s designed to monitor the tweets from the people the app-user follows on Twitter and flags up any Tweets with specific key words and phrases that might be concerning, and reports them to the app-user. At first glance a nice way to make sure your friends are ok and to make sure you don’t miss any tweets from them that means they might be in trouble.

I am a former Samaritan volunteer and I do not like this app at all.

I will always defend Samaritan volunteers. They do amazing work and it’s the sort of thing that you really don’t know what it’s like until you do it. It isn’t easy, it takes a certain kind of person to be a Sam and you cannot do it to boost your own ego – you become very humbled very quickly. This is why I’ve come to the conclusion that there may have been little to no consultation with the volunteers before this app appeared.

Let’s look at it from the point of view not of the app-user, but the tweeter being monitored. The app itself is called the “Radar” app, and even in the name gives connotations of being watched, being monitored. How likely are you to tweet about your mental health problems if you know some of your followers would be alerted every time you did? Do you know all your followers? Personally? Are they all friends? What if your stalker was a follower? How would you feel knowing your every 3am mental health crisis tweet was being flagged to people who really don’t have your best interests at heart, to put it mildly? In this respect, this app is dangerous. It is terrifying to think that anyone can monitor your tweets, especially the ones that disclose you may be very vulnerable at that time.

From the perspective of an ex-volunteer, I find it baffling that the concept of choice has been completely taken away. Samaritans was always about choice. Choice to talk, choice to take action or not, even down to the choice to end your life or not. Sams never judged, they listened. This is the opposite of that. This takes away the choice of the tweeter to seek help themselves. This is so far away from the whole ethos of Samaritans, that we are there for people to come to us. While the app has no literal connection to the Samaritans service – it flags it up to the app-user, not to the Samaritans service directly – it still removes choice.

And the bottom line is, monitoring people’s tweets is just not a good idea. At all.

This is why I’ve come to the conclusion that the people who do the listening had very little to do with this. Because they would not have liked it. I will always stand up for Samaritan volunteers and the fact this app is doing something like this in their name makes me angry, and worried that it will effect what people think of the service. Samaritans are amazing people, please don’t let what’s happened today influence your opinion of the service they offer. The people in Samaritans who are responsible for developing this app NEED to read people’s reactions and they need to take swift action. The thought that this could damage their reputation breaks my heart. They need to fix this.

Please note that the Samaritans Radar app is not connected to the volunteers that man the phones 24 hours a day.

Please do not let the arrival of this app stop you from using the phone line to talk to a trained and experienced volunteer listener.

Samaritans is a 24-hour phone line for who are in crisis and need to talk. There are call charges but you can ask to be called back.

08457 90 90 90

Thank you to the people I follow on Twitter for identifying the ways this app can be very dangerous.

**Opinions stated in this blog are mine and do not represent the opinions of Samaritans or their volunteers**

[Edit 13th Feb: The WHO has confirmed on Twitter that they have no plans to reclassify the conditions, and that their site is a BETA site for health professionals to contribute to. However the work of Dr. Fink still persists and these misdiagnoses of CFS/M.E./fibromyalgia still occur and are still just as dangerous so I feel the point this blog post makes is still just as relevant and important.]

This afternoon, a load of posts appeared on Twitter about an article that had appeared on the Liberty Voice website.The article was titled “Fibromyalgia and ME/CFS Labeled Mental and Behavioral Disorders by WHO” and has, understandably caused a whole load of panic among the fibro/M.E/CFS community. The fight to get these diseases correctly classified as physiological rather than psychological has been long and on-going, and this seems a big step back in the wrong direction.

“Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body.”

Bodily distress disorder is classified on the WHO classifications as a “mental and behavioral disorder”. This means that fibromyalgia, CFS and M.E. will be classified as something that has to be treated as a psychological illness, rather than a physical one. This is very problematic. Although psychological illnesses are valid illnesses that need to be treated correctly, treating a physical condition as a psychological one does not work. You cannot treat cancer solely by sending someone to group therapy, you cannot treat M.E. solely by sending someone to CBT.

Dr. Fink runs a clinic called The Research Clinic for Functional Disorders and Psychosomatics. On his website, he classifies conditions such as fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome as “bodily distress syndromes”. He feels that these conditions are all the same thing, that if a condition can’t be diagnosed in testing (such as arthritis) then it is a psychological disorder. This clinic is currently responsible for Karina Hansen, a 24 year old with M.E. who was forcibly removed from her home to go to the clinic and get treatment.

Classifying genuine physical conditions as psychological is dangerous. It will mean people will get the wrong treatment and will not be given any opportunities to improve their condition. In a lot of cases, it will make their condition worse. There is a lot of discussion in the M.E. community about graded exercise therapy and how successful or otherwise that is, and I’m planning on compiling some info about that for another post. However, regardless of whether these treatments work for some or otherwise, treating a physical illness as a psychological one means people who have these conditions will be mis-diagnosed and mis-treated.

It also de-legitimises the people who have these conditions. Psychological illnesses are very valid illnesses of course, but to tell someone that the pain and debilitating fatigue they suffer from is a psychological problem is, quite frankly, offensive.

On her blog, fibrogirl has suggested some ideas for action:

“1. Research – pull it all together fully referenced in one place, including bloggers links etc2. Lobby 3. share our stories – our truths 4. Galvanise the online community, our friends and loved ones to make a bloody big noise – that is coordinated and focused5. leave a reply here if you are willing to help. I‘m just one scared angry voice – I cant do anything alone. I’m not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve...a true diagnosis and treatment that helps us manage these disabling illnesses“

I totally agree with what she says. I am a relative newcomer to this community, there are many people out there who have been fighting this battle for years. However I feel I have a duty to educate myself on this, and to share the information I find out in a way that might make it easier for people to understand the problems we’re facing. I agree with fibrogirl – we need to step up the fight and start making a bigger noise.

Three weeks. That’s how long it took. Granted, one of those weeks I spent five out of seven days sleeping because, well, fibromyalgia but altogether it took three weeks. Culminating in, on Thursday night, me lying in bed with my eyes closed while my fantastic husband picked over my answers with a fine-toothed comb, suggesting things I could expand on or add to make sure the DWP know every tiny detail of my health information. By that point I was unable to look at the thing any more and it had all become meaningless words to me.

Three weeks and only two ugly crying sessions about how crap my life had become, so that’s not too bad, all told.

Three weeks of doing one question at a time because I couldn’t write for very long, couldn’t sit up for very long, couldn’t concentrate for very long and there’s only so long you can sit listing everything that’s wrong with your life before you want to go and have a very long lie down.

We posted it off on Friday (recorded delivery, after my husband once completed a whole DLA renewal form for the DWP only for them to lose it and claim they never ever received it ever honest) as the form was due in yesterday.